My husband is stage 5 GFR 9. He’s not on dialysis yet he has high blood pressure and on the line of diabetic. He’s 53 he has rheumatoid arthritis which he takes Humira for and psoriasis.
He’s slowly declining and needs to get the stomach port to start dialysis. But this past Monday he woke up with zero strength in his hands. They don’t hurt he just can’t use them I help his put on his pants, put his socks and shoes on he can’t even open the door knob.
Has anyone else experienced this is so odd and I've been searching and can’t get any type of answers. Any help would be greatly appreciated!
Thank you
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Jmccool
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I'm glad to hear that he has decided to begin dialysis. As far as his current situation, I'm afraid there isn't anyone in this community who can or should make a diagnosis about his hands. At best it would only be a guess. You really should contact his doctors and see if they can see him immediately. I'd start with his PCP and go from there. I hope you find out soon what the problem is and have it taken care of. Best of luck.
Fatigue is a common symptom of kidney disease. A severe decrease in kidney function can lead to a buildup of toxins and impurities in the blood. This can cause people to feel tired, weak and can make it hard to concentrate. Another complication of kidney disease is anemia, which can cause weakness and fatigue.
Be sure to check with the nephrologist about his symptoms as they may have specific advice for you to follow.
It could be a lot of things, but muscle weakness is a common diabetes symptom (you mentioned he has diabetes). You should really get him checked out by his doctor as soon as possible so he can be diagnosed. There's something called "peripheral neuropathy" that you should be aware of if your husband has diabetes:
Really good news that your husband is ready to start dialysis
And, as others have said, this situation requires immediate medical attention. As I've often said, this stuff gets really complicated, especially for those of us without medical degrees So, please contact both your husband's PCP and nephrologist for some help with this.
Meanwhile, let us know how it goes with dialysis for your husband (and you, his care provider
I just want to direct you to something else about psoriasis and rheumatoid arthritis. People with psoriasis get psoriatic arthritis. Very similar to RA, but does present differently. I have psoriatic arthritis (PsA) and psoriasis(P). Both were very hard to diagnose. They finally diagnosed the PsA when my hands started to curl up. I could not hold on to a pencil.
The PsA led to all the kidney issues due to high uric acid, which cause kidney stones, and on and on it went. My first prescription was 1800 mg of Advil, Prednisone and daily shots of Methotrexate. The result was it crashed my kidney which eventually rebounded to GFR of 41. The stones and acid continued until I was put on allopurinol and sodium citrate.
I have been on over 9 medications for PsA. My kidney function is directly affected by the efficacy of the drugs I am on.
Even so with proper medication, last summer I lost the ability to move my thumb.... just out of the blue. The pain continued for a couple of months, and then went a way. It was a PsA flare. I have had them elsewhere too. With PsA, there are not nodules. It just attacks random joints with inflammation and pain and swelling.
I am sorry for what he is going through. It is not uncommon with PsA. I was on Humira and had significant decline with my kidney and it did not help the PsA. On top of all the things going on with his getting prepared for dialysis, see the rheumatologist. Biologics will fail after time.
Hello, yes I def think this is related to his RA he also has psoriatic RA. The Humira used to work and now it’s not. He has hereditary kidney disease and the PSA from all of the steroids and Advil he’s taken over the years has contributed to his kidney failure. I truly believe this is a PSA thing with his hands. The Nephrologist told us the only thing he can take is Tylenol and the Humira or injectable drugs bc they don’t effect his kidneys but I’m thinking that’s not true from his decline. He’s 53 and his body is like he’s 80 and it’s heartbreaking to watch. We are currently waiting to get blood I will know his GFR tomorrow and know this will push him to finally get on dialysis. 😞
No there are many different drugs for his RA or PsA that he can try. Like I said, I have been through over 9. And when I think back I am actually on the 11th.Enbrel worked for me for over 7 to 8 years. I did not know it was failing nor did I understand it until I actually complained to the doc. We went through years of finding the right drug for me, which was Stelara. But it is one of the most expensive ones out there. Because of insurance, I HAD to go through using all the other ones and proving they failed. This to me is an outrageous practice but this is what is done. So for years, I went on drugs that did more harm then good. I mean I really got sick. Then when I finally got approved for Stelara, it was a miracle drug for me. It was like I was back in my thirties before all this crap started. But....alas, it too after three years began to fail.
But the biggest scam is this that I am doing now. I am on Orencia. It is similar to Stelara but because I turned 65, I have to go to the doc's office and get an infusion. Orencia does come in a shot, but Medicare will not pay for it and I felt the over $1500.00 co pay a month was a bit steep. By going into the infusion center, it is totally covered. Does this make sense? NO. Tt costs way more for them to infuse me than for me to give myself a shot.
Fight for what you need. Keeping my PsA under control has helped with everything else being stable.
I am getting him into a new rhemotologist to see what can be done. His blood work came back his GFR is 9.7 so it’s still holding around 10. I don’t know what to do Hes still fighting the dialysis and he has a test called PTH Intact and his # is very High which is hypothyroidism causes from his kidneys. We are thinking of applying fir disability at this point he can hardly move with his psoractic arthritis and he is tired all the time and gets sick and nauseous. Just don’t know how or where to start. 😞
You do have a full plate. Here is my suggestion. There should be a social worker associated with the dialysis center. They should be able to help you apply for disability. It is a process and you can stop it if you decide to not go that route. But since it would alleviate a lot worry for you I would suggest starting the process. Do not be deterred if you read that for disability you have to be on dialysis. He also has RA and that is a qualifier. You might want to look into finding a lawyer who specializes in helping people get disability. They get paid when you win your case in many cases.
Also, you might check with his benefits person where he works to see what they have. Does he have short term disability through work? If nothing else, file for FLMA and protect him from being fired.
I understand being frustrated about him not being on dialysis. But I understand him not wanting to do it either. Maybe if he can get the RA or PsA under control he will feel better and his levels might improve...maybe not. But getting the pain from the PsA calmed down will help.
I am just going to add one thing. I understand how you feel about your hubby being sick. It is hard to watch and hard to be a caregiver. Take some time to reward yourself for all you do. And find some help with the professionals he sees. Tell them what YOU are going through and see if they can support YOU better. Hang in there. Your husband is a lucky man because of you.
Thank you very much. I made an appointment with the social security office and see what his options are and he is a manager for an automotive shop I will have him check into the short term disability. I understand he doesn’t want to do dialysis I a just very overwhelmed. Glad I have you and everyone else here.
It’s a lot of work for you though. My husband is great but he’s also an RN. He knows a lot.
We both cared for my mother on hospice for 5 yrs. it was exhausting. Get out for yourself some to rejuvenate. Even someone to sit with him for an hour and take a brisk walk and buy yourself something to eat that you love.
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